How it works for me

[bagboy]

I will start by saying that I have no business or other connections to any companies providing stoma care or any other fiber supplements or materials, but I will note that Coloplast did once send me a complimentary pair of stainless steel scissors.
I also realize that this post is longer than normal but hope that there are some nuggets of information for some of you in it.

What has happened and how I live with it.

Background

Male, age 55 at diagnosis, (five years ago) Wt 165, ht 6’-0” reasonably fit and fairly active in self-propelled wilderness adventures; backpacking, hiking, ski-touring, rock climbing and sea kayaking. Around the house physical activities include building everything, providing assistance in the garden, cutting and splitting firewood and a plethora of other things that anyone who lives on a small rural acreage will understand. Professionally, I work in the construction field. I now do very little hands on work other than for myself, although I do spend a fair bit of time on site.

Diagnosis

My first go around was a colonoscopy about eight years ago with a small hemorrhoid being blamed for the small amount of blood I occasionally found in my stool. A couple years later I started to see some blood again but was slow to go back to the doctor as I was only expecting another hemorrhoid. A few months later, after waking up out of the sedation, I was told that I had an adenocarcinoma that was low enough that the surgeon who found it wanted me to consult with another surgeon before having it removed. (If my cancer was much lower I would have probably been sent to a dermatologist.) T2 N0 was the final diagnosis. I went on to radiation combined with oral chemo, treated for a T3 N1, and made my chemotherapist, oncologist, family doctor and surgeon aware that I was only going to proceed directly to surgery if there was still cancer present after allowing the R/C to do its work. In my case there was no cancer present after the R/C, so I went forward with what was then called the “wait and see” approach. I will note here that at the time I did this my wife and all of the medical personnel I was dealing with wanted me to go directly to surgery…

Action

A year or so later the cancer was found again, and I then agreed to go forward with the surgery. The day before the surgery I did have a meeting with a nurse for the location of the stoma. I would have like to have had more time to go over options for the siting of said stoma. While location is very important, it is almost impossible to locate a stoma that will not be a conflict for someone who wears as many different belts and harnesses as I do. In the end it will be in conflict with at least one…

Reality

Coming out of the hospital, I was wearing a Hollister flange with a re-closable bag. That system worked, although I found the stiffness of the closing system at the bottom of the re-closable bag to sometimes be uncomfortable, although this is not exclusive to Hollister by any means. I also fairly quickly decided that I liked to shower with the bag off, so as not to have to try to dry the bag before dressing. (NOTE: be careful to protect your stoma from the showerhead spray if you use a high pressure type of shower head, as I understand that a stoma could be damaged from that sort of spray.) The Hollister flange was comfortable enough to wear when dry but seemed to soak up water when showering which led me to switch to the Coloplast Sensura Mio system. The Coloplast flange is a soft, flexible rubberish material where it adheres to your skin and does not absorb any water or moisture when showering or otherwise. (Note; the Coloplast flange has a small “tab” for ease of removal and I find it best to place the tab at the bottom rather than the top, or “upside down,” at least according to one stoma nurse.) I have also switched to a closed end bag, sized “midi” or what I think most would call small to medium. I line this bag with a colomajic liner, sized medium. The colomajic liner I use is considered biodegradable and offers a great deal of convenience to the user. I empty about 4 times a day, as I do not like to be packing the stuff around, and I can remove the bag, pull the liner, re-line the same bag with a new liner, and have everything clicked shut in about the same time that it takes for most to urinate…
Typically, I am wearing my flanges for six days before changing, and I am getting two or three days out of the bags. Liners of course are a single use item. I have had the odd liner spring a leak/blow apart but the mess has always been contained by the closed end bag, so in the end the net result is just having to change the closed end bag sooner.

TIP Bag to flange

I am not sure if it is just me, but when I first started using this system I would often find it difficult the first time I installed a bag to the flange and using a liner does not seem to make this any easier. Something that I have started to do that has made the “connection” much easier for me is to keep my “on deck” bags and flanges, say the next five of each I will be using, coupled together while stored. Keeping the bag coupled to the flange for even a few hours before trying to connect a new bag to a flange makes this process much easier and much less frustrating.

Other tips, thoughts and comments

It has now been several years since my surgery and I have found a system for dealing with my stoma that works for me. We all have very different needs, enjoy different things, and live different lives. I realize that my stoma system might not work at all for some of you while others might be helped by some of this.

Stoma location

My stoma is located about 2”/50mm below and 1”/25mm to the left of my navel. This has resulted in my daily wear pants being either Carharts; the heavy duty work style, or LLBean “classic fits,” both of which are fairly high waisted. My old favorite pants, shrink to fit Levi 501’s, are a little too low for me to wear anymore.
My stoma is also a concern when wearing a heavy pack as the stoma is in direct line with the hipbelt, which needs to be fairly snug to work properly. Other than a porter, I have yet to find a good workaround on that one... Interestingly enough, a rock-climbing harness is not a problem though, as the belt portion goes around your waist, above your hips…

Shaving

I found shaving around the stoma a bit intimidating initially, but like so may things after you have done it a few times it becomes much more straightforward. I can remember reading about someone who used a “sharp hunting knife” to shave the area closest to his or her stoma, I would not recommend this to anyone! The reality that I have found is that the odd hair missed by the razor (I use a disposable on dry skin) is not really a problem, particularly if it is very close to the stoma. I typically find that after my six days of use that the first 0.25”/5mm or so of the flange is starting to lose its adhesion. (The rest of the flange is still stuck on very well after the six day period, peel it off sloooowly.) With hindsight it might have been worthwhile to have laser hair removal done around the area of the stoma, before the surgery of course, to save this one small step and that is worth considering for someone having this surgery. Evidently laser hair removal is not really permanent in spite of those ads you see on the back of busses, but even if only was god for six months or so it might help...

Metamucil

I find adding a few Metamucil or similar pills to my daily routine helps to keep my stool firmer and hence easier to manage from a disposal point of view. Metamucil will not keep you from getting diarrhea though.

Wet ones, Baby wipes or other similar cleaners

These pre soaped disposable cleaners can be a godsend in helping to clean up but be careful with them when you are applying a new flange. I was on a remote camping trip and used one to assist in cleaning around my stoma before putting on a new flange once and the flange fell off in minutes due to the residue left behind on my skin from the cleaner…

I hope the above is of assistance to those of you who have or will be getting stomas.

Best to all of you,
Bagboy

[To Dream a Dream]

Thank you for your highly informative post. Although I have an ileo (for Crohn's since childhood), I found some of your own experiences with appliances applicable & know that everything you mentioned will be 'right on' with many many members of our discussion board. Thank you for sharing. It is what UOAA is all about. Taking time & effort to reach out to others. We never know how much of an impact we may make. May you & your loved ones stay safe during the current health crisis.

[bagboy]

Dream a Dream,
Thanks for the feedback. I was able to glean some good information from this site both before and after my surgery and would like to payback by adding my .02 to the mix. I found it easier to find "thin slices" of information when I had questions but not so much about the whole package, hence my post.
best to you and yours as well,
bagboy

[bambam3343]

Bagboy
Your story is a mirror image of my own although I am 10 years older. I also use coloplast on my third week can you tell me where you get these liners.

Bambam

[bagboy]

Hi Bambam,
Probably best if you contacted colomajic through their website. You can ask for a sample but they are relatively cheap so you might just want to buy a box of 100 anyway.
When you size the liner it should be at least as large as the outer bag, definitely not smaller.
I have been using the liners for about two years now and find them very user friendly. I usually have a ziplock with two or three liners in my pocket and do not carry any other “hardware” on a daily basis. If you were ever caught out without a spare liner you could use the closed end bag without a liner.
Also, remember my tip about storing your bags and flanges clicked together. Doing this will make installing the bag, with a liner, to your flange, much easier.
Let me know if you have any other questions.
Bagboy

[bambam3343]

Thanks for the info I’ll give them a try

[sandys]

Liners.

Some years back during a discussion of liners someone said they had used the pet poop bags f one finds at the dollar stores. They don’t claim to be biodegradable however,but you could try them out before you decide.

Take care,

Sandy in Indiana

[bagboy]

Hi Sandy,
The DP bag sounded a bit like an urban myth, but then I thought this is my chance to be like the guys on TV; you know, the ones who usually manage to test an urban myth by blowing something up...
So the DP bag is a pretty big bag, I started by cutting it a bit shorter then lined my bag with it. Lots of bag to pinch in the flange but it was doable. I carried it for several hours in the morning then took it out. No leaks. There was a lot of bag there though so I dumped my “ collection” in the toilet (without the DP bag) flushed it then disposed of the DP bag in the garbage as I was concerned about flushing so much heavy bag down the toilet.
I would not recommend flushing a DP bag unless perhaps you lived next door to a sewage treatment plant.
All in all it did work but not something I would go out of my way to do again.
In this case it was just as well that nothing blew up, too!
Cheers,
bagboy